Genetic ‘Risk Carriers’ and Lifestyle ‘Risk Takers’. Which Risks Deserve our Legal Protection in Insurance?

Abstract

Over the past years, one of the most contentious topics in policy debates on genetics has been the use of genetic testing in insurance. In the rush to confront concerns about potential abuses of genetic information, most countries throughout Europe and the US have enacted genetics-specific legislation for insurance. Drawing on current debates on the pros and cons of a genetics-specific legislative approach, this article offers empirical insight into how such legislation works out in insurance practice. To this end, ethnographic fieldwork was done in the underwriting departments of Belgian insurance companies. Belgium was one of the first European countries introducing genetics-specific legislation in insurance. Although this approach does not allow us to speak in terms of ' the causal effects of the law', it enables us to point to some developments in insurance practice that are quite different than the law's original intentions. It will not only become clear that the Belgian genetics-specific legislation does not offer adequate solutions to the underlying issues it was intended for. We will also show that, while the legislation's focus has been on the inadmissibility of genetic discrimination, at the same time differences are made in the insurance appraisal within the group of the asymptomatic ill. In other words, by giving exclusive legal protection to the group of genetic risks, other non-genetic risk groups are unintendedly being under-protected. From a policy point of view, studying genetics-specific legislation is especially valuable because it forces us to return to first principles: Which risks deserve our legal protection in insurance? Who do we declare our solidarity with?

Degree of solidarity with lifestyle and old age among citizens in the Netherlands: cross-sectional results from the longitudinal SMILE study

“…However, in practice it is not possible to determine whether people base their opinion on a certain lifestyle or whether their opinion may also be influenced by other factors that may be related to health outcomes, such as old age 14. The main goal of our study was to determine the opinion on solidarity in healthcare.…”

Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

“…Internationally, various measures have been introduced to address GD. Research has been conducted into the effectiveness of the regulatory mechanisms used in European countries, such as ethnographic fieldwork within insurance companies [22] and postal questionnaires to individuals with a pathogenic variant [23]. Varying levels of effectiveness are reported, demonstrating the need to monitor compliance with and effectiveness of recently implemented policy changes.…”

Contested technology: Social scientific perspectives of behaviour-based insurance

“…Further, the use of protected attributes, such as religion, sexual orientation and ethnicity, is prohibited by anti-discrimination laws (McFall, 2019: 71;Meyers, 2018: 120). The demand for such protections stems from the question of solidarity: Who is seen as eligible for insurance, and what kinds of risks are seen as worth insuring (e.g., Lehtonen and Liukko, 2011;Van Hoyweghen et al, 2007)? Because insurance is generally understood to be an instrument of solidarity instead of discrimination (Prainsack and Van Hoyweghen, 2020), and access to healthcare is defined as a fundamental right (European Union, 2012;WHO, 2017), insurers' attempts to narrow the risk pool have been met with critical scrutiny.…”